Tuesday, June 3, 2014

The Great Divide

Hendric Stattmann"The Grand Canyon"
Two bills in Congress, both designed to improve mental healthcare, reveal a growing rift in the mental health community

Like many parents of children with mental illness, I have spent much of my life feeling isolated. At social events or the morning water cooler, while other parents share their children’s accomplishments—“Mary got elected to Student Council! John got the MVP award for his soccer team!”—I am usually silent. It’s hard to brag about how your child was able to plead his misdemeanor battery charge down to a mere juvenile beyond control status offense, or how he was the star patient in his psychiatric ward last weekend, even though both are arguably notable accomplishments.

When I finally spoke out about the struggles my family faced, I found an instant new community of friends, mothers like me who had become vocal advocates for their children’s care. But I also discovered that not every mental health advocate supports the same goals I do. This rift in the very advocacy community that should be supporting parents like me and kids like my son has been growing for a while. The divide has widened even further after the tectonic tragedy in Santa Barbara, when a young man whose parents had sought treatment for his mental illness for years took his own life—and the lives of six other people.

At its center is a disagreement about serious mental illness—schizophrenia, bipolar disorder, and major depression—and the best ways to care for this vulnerable population. That disagreement is evident in the contrast between two proposed bills that both seek to remedy America’s broken mental health care system. To my mind, the biggest difference between the two bills is this: one treats people with serious mental illness. The other does not.


One of the most controversial features of Representative Murphy’s HR3717, the “Helping Families in Mental Health Crisis Act,” is its Assisted Outpatient Treatment requirements, which the opposition has labeled “forced treatment.” Yet even Representative Barber, the author of the second bill, acknowledged on Monday’s Diane Rehm Show that “involuntary treatment is necessary from time to time.” And many of the provisions in HR 3717, including a revision of HIPAA laws, might have stopped Jared Loughner before he shot Rep. Barber in Tucson.


Dr. John Grohol and others like him are worried about “arbitrary distinctions” in mental illness he says HR 3717 creates. I agree with Dr. Grohol’s point that all mental illness can be crippling or even deadly, just as a cold, if left untreated, can lead to fatal pneumonia. But I also think we do need distinctions in mental health, just as we have them in physical health. The current focus on behavior rather than organic brain disease is the real challenge in making sure that people with serious mental illness get the medical care that they need. As I mentioned in an earlier blog post, “Oh SAMHSA, Where Art Thou?” there is no readily apparent or useful information for me, as a parent of a child with serious mental illness, on SAMHSA’s home page. And this is the government agency tasked with providing resources to people with mental illness!


As I read the opposition’s often vitriolic attacks on mothers like G.G. Burns, a friend of mine who shared her family’s painful story with Diane Rehm yesterday, I’m reminded more of religion than science. We have this very human tendency to rely on our own belief systems about the mind, and especially about our ability to choose and to be accountable for our choices, rather than looking at the choice-stealing reality of brain disease. G.G., in talking about her efforts to get treatment for her son, told a harsh truth: “We are forced to watch our loved ones die with their rights on. Without help, there is no hope.”


The comments section of Diane’s show demonstrates the wide variety of challenges parents continue to face, and why so many of us are still afraid to share our stories. We have the mental illness deniers, the Mad in America anti-medication crowd, the folks who blame our bad parenting, the consumers who think that everyone with mental illness can seek treatment and recover like they did, and the E.F. Torrey haters (and boy, are they an angry bunch! They should try some SAMHSA sponsored yoga!).

Still, I think that a robust discussion about HR3717 is a good thing. Task-oriented conflict can ensure that the end result—fixing our broken mental healthcare system—is the best it can possibly be. And certainly the experiences of people who have experienced involuntary commitment need to be carefully considered (see this powerful essay at "The System is Broken," for example ). I wish Diane Rehm had included the voices of people with serious mental illness on her show.

But when we rely on our belief systems about what mental illness is (or isn’t), when we retreat to our anecdotal or lived experiences rather than considering other points of view, it can be too easy for the dialogue to devolve into person-centered attacks rather than focusing on productive, inclusive solutions. We don’t have time for any more of that kind of talk. The consequences of inaction on mental illness are unacceptable. We cannot continue to treat serious mental illness in prison, or to ignore it on the streets. That’s why I support HR 3717.

12 comments:

thesystemisbrokenblog said...

(1) I really appreciate that you included my perspective on this issue. I think we are in desperate need of more polite, respectful discussion and disagreement on this matter, although I understand the emotions that often get in the way of that, on both sides of this debate. Parents such as yourself are, understandably, frustrated that they don't have an unlimited ability to require that their children, who are clearly struggling, get help. You see your loved ones acting out in ways that seem to endanger them and those around them, and are, rightfully, angry that those who disagree with you, like myself, seem to care more about your children's human rights than their safety. Those of us who have been deeply and grievously harmed by forced psychiatry are righteously angry that you push to make it even easier to subject us to psychiatric practices that we do not consent to, and that are, often, traumatizing and dehumanizing, and worsen the emotional distress that lead to the forced intervention in the first place. All that aside, until we can all take a deep breath and start seeing the value in and reasoning behind our opponents' opinions, this divide will, most likely, just deepen.

That being said, I would like to address your characterizations of those who are against forced treatment. "We have the mental illness deniers, the Mad in America anti-medication crowd, the folks who blame our bad parenting, the consumers who think that everyone with mental illness can seek treatment and recover like they did, and the E.F. Torrey haters (and boy, are they an angry bunch! They should try some SAMHSA sponsored yoga!)." I, in one way or another, see myself in each of these descriptors, and would like to address each individually. "Mental illness denier" seems to be a blanket term for those who don't believe that emotional distress is a biological brain disease, so I'll address it in that context, but please, feel free to correct me if that wasn't your intention. I do not believe that emotional distress, even when it manifests in the form of mania or psychosis, is necessarily indicative of a biological abnormality. The correlation between trauma and even the most severe forms of emotional distress is quite high, and it does a great injustice to trauma survivors who, for example, have learned to cope with their tormented pasts by convincing themselves they can do anything and acting a bit erratically within that thought (aka mania). Here are just a few of the studies citing this connection: http://ajp.psychiatryonline.org/Article.aspx?ArticleID=1680037, http://www.psy-journal.com/article/S0165-1781(13)00311-9/abstract, http://onlinelibrary.wiley.com/doi/10.1111/eip.12008/abstract).

thesystemisbrokenblog said...

(2) Even if someone who is in distress does not have a significant trauma history, some people are a little more sensitive to the innate injustice of the everyday world that we live in, some are using recreational drugs that those around them are unaware of, and some have psychological manifestations of treatable or curable medical conditions. I do not think that the "brain disease" theory can even be considered until every other possible source of distress is thoroughly investigated. I would also be reluctant to rule out trauma so quickly. I was in therapy for quite a while before I disclosed that I had any history of abuse, and it took five years of therapy before I told my therapist the extent of my trauma history. This also plays into the "folks who blame our bad parenting" descriptor. Very few people still believe that the source of all children's problems are his parents. However, once the role of trauma in emotional distress is established, if parents were the cause of that trauma, this certainly needs to be looked at. There are, without a doubt, wonderful parents who have troubled children. The problem is when someone acknowledges that their problems stem from parental abuse, and are, instead, told that they have a "brain disease." It could certainly be argued that I have had a lifelong brain disease, in the form of depression, if one was to examine nothing but "symptoms." I remember praying for death and even considering taking my own life as a very young child, and experienced years of depression and multiple suicide attempts, but that description effectively ignores the context which, in my case, was that I was being sexually assaulted multiple times each day for a significant portion of my childhood, in a situation that has spilled over into my adult life. I spent years on different medications which only made things worse, and was only able to find any relief with the help of the first therapist who said to me, "You're not crazy- you're just traumatized," and helped me begin to process my experiences. Parents can be incredible allies to struggling children, but assuming that they are when there are assertions or other evidence to the contrary is also a mistake and unbelievably damaging.

Regarding medication, I think there are few people who are 100% anti-medication. However, many of us disagree that drugs with incredibly dangerous side effects that have the potential to exacerbate the very symptoms they are meant to treat should be such a knee-jerk response to emotional distress. Personally, I see no issue with someone in crisis turning to a medication that they know will help them, but I, like many other people, have never found a chemical cure to be beneficial, and find it irresponsible to ignore the substantially earlier deaths that tend to plague those who take psychiatric drugs for life. I firmly believe that people need the space to decide what works for them, whether that is a medication, herbal supplements, a certain type of therapy, peer support, or some combination of all of those, and that there is no justification for forcing someone to choose a certain path to healing, not to mention that when someone's troubles stem from unresolved trauma, even "effective" medications are only putting a flimsy band-aid on the wound. Those of us who hate E. Fuller Torrey are simply tired of the scapegoating and demonizing of those who are in emotional distress, and listening to this being used to justify even more rights violations. I have to wonder how many of the people who are seen as "noncompliant" or "suffering from anosognosia" might seek help if there was more on offer than locked psych units and drugs that, in many cases, make the problem worse.

thesystemisbrokenblog said...

(3) Unfortunately, there will always be people who will insist that they don't need help. We see this in every facet of society, from the people who insist they don't need directions and drive in circles until they run out of gas, to people who are visibly intoxicated but choose to drive or handle a weapon anyway. However, we don't forcibly implant a GPS or breathalyzer into the arms of everyone who's marginally directionally-challenged or prone to drinking in order to prevent this, as we recognize that until someone commits a crime, dealing with some less-than-perfect behavior is the price of freedom. In theory, "innocent until proven guilty" means that we would rather let ten guilty men go free than imprison one innocent man by mistake. Even as it currently stands, our mental health system does not agree. It would rather rope in countless people who are misdiagnosed, struggling but not a danger to anyone, or simply do not benefit from or are traumatized by standard treatments in order to potentially help some of the very few who do not recognize that they're struggling.

The problem with asserting that people are "too ill to know they're ill" is that there is no way to counter that argument when you are so accused. Trying to provide facts to back up your assertions is seen as another sign of your illness. When we acknowledge that a great deal of emotional distress stems from trauma, we must acknowledge the re-traumatizing effects of forced treatment. Many people experience forced treatment as akin to sexual assault, and it is impossible to deny the traumatizing quality of forced confinement. Imagine being a survivor of sexual abuse, and being tied to a bed or having your clothing removed in order to forcibly inject you in the name of "treatment." It would also be irresponsible to ignore the ways in which forced psychiatry is misused to punish political dissidents, by abusers seeking to discredit their victims, and against those with misunderstood medical conditions. Personally, I am being treated for a rare disease which currently divides the medical community- many professionals are convinced that it is not a real disease, and just some sort of manifestation of mental illness. Even with relevant, indisputable test results and multiple medical professionals who are firmly on my side, I know that until I am able to recover (if that is even possible), I am still at risk of forced psychiatric interventions. This seems utterly unacceptable to me, and adding more legal justification for it would be nothing short of tragic and inhumane.

There are already legal remedies in place for parents whose children are struggling and acting out dangerously or threatening to do so- parents are well within their rights to try and force a child into a hospital for this reason- even an adult child. If someone knows that they go through phases of their distress in which they are unaware of what they are experiencing, they can complete a psychiatric advance directive to legally consent to a given treatment prior to such a crisis. Forcing more people into the system and giving psychiatrists, who fully admit that they misdiagnose people about half the time, even more power, is illogical.

thesystemisbrokenblog said...

(4) I have been repeatedly told to focus on helping other trauma survivors, and let the professionals handle the "seriously mentally ill." However, I firmly believe that supporting trauma survivors means supporting all trauma survivors, and not just those who reacted to their torture in the more stereotypically trauma-induced ways that I have. It would mean a lot to me, as well as to all of those who suffered as I did and now present as "seriously" ill, if others would heed the same call.

Karen Easter - advocate for timely treatment of severe mental illness said...

As a fellow mom advocate, let me just say ... you nailed it with this post. Thank you. Thank you. Thank you. For saying what needed to be said.

Susan Inman said...

Excellent blog.

And one of the many terrible consequences of SAMHSA's misguided policies is the astonishing lack of even basic information about mental illnesses among people who deny their existence. Since SAMHSA should have been educating the public about the state of knowledge, we see one source of the problem. SAMHSA also fails to educate people with disorders about the state of science based knowledge about their illnesses.

I suggest people go to google scholar and search under: schizophrenia brain
Just because there's no easy biomarker for diagnosing, some maintain there's no proof this is a disorder. There's no biomarker for diagnosing Alzheimer's either.

Unknown said...

Liza, Thank you for your courage and openness which are both so badly needed. Its hard to speak out when there are so many "haters" waiting to pounce and judge. NO ONE has all the answers to mental health problems. We just aren't there yet in our knowledge, and until we are (which may be never), we are doing the best we can. IMHO, so-called "mental" illness should not carry any more stigma than other bodily illnesses. Last time I looked, the brain was part of the body. Keep up the good work, and know there are many who appreciate you!

Flan said...

Thank you Tracey,


My family started the journey into the realm of treatment for the seriously ill with mental illness when my twin brother Paul became severely ill with schizophrenia in 1976. At the time, the severity of the illness, not whether Paul was a danger, was the deciding factor for the need to keep him in the hospital. It was the fact that his positive and negative symptoms were very severe...had nothing to do with his "behaviors" per se... now it is all about behaviors even though Dr. Insel of the NIMH will tell everyone that it is the very psychosis that is the danger...to the person's brain.


The fact that Paul had no clue he was sick, combined with the persistent severity of his symptoms, meant he did not have the capacity to handle or benefit from treatment in the community... This perfectly aligns with Olmstead. Yet it is ignored by the disability rights groups. Yes, the state hospitals were crumbling run down places and at the time even I considered it like a prison. ..but it wasnt...it was a hospital... but I can almost guarantee that had Paul become sick today...He'd be in prison because of this horrible "dangerous" standard which no other illness is required to meet when a person lacks capacity.


My parents agonized over the decision to have Paul committed. Yet, when he was released, we were unprepared for the changes that we had no clue had taken place during those 20 yrs...and Paul suffered greatly from the expectation that he learn to "live like an adult" when he was still delusional and had severe cognitive disabilities (schizophrenia is, after all, a developmental, cognitive brain disorder). And he never gained real insight...even when he was dying of lung cancer. It took a fatal illness to get him in a facility that treated him as a whole person....yes, an institution, and it was the one year that he had the best mental state he ever had in his life. I will cherish that last year.


I am so very grateful now that my parents were able to commit him, as agonizing as it was for him and us. Since there was no HIPPA, my mother was still very involved in his care...was there every week for 15 yrs...till she died....and the doctors gladly shared what they were doing and what his condition was with her. We did not get that same cooperation when he was released...to the detriment of both Paul and us.


Not all are so severe that they do not recover, as Paul never did. Not all need institutional care - most don't. But they aren't getting the chance of treatment now, like Paul did.


Many friends of mine have a "Paul" of her own. There are far too many of them out there who are crying out for help and now one has listened - until now (HR3717). I call them Tiger Mothers of Perpetual Determination... my mother was the original. I am a Sister of Perpetual Determination.

I am Adam Lanza's "sister".

Paul had a rough life, made worse by the failures of the system, beginning with the Medicaid Institutes for Mental Diseases (IMD) Exclusion, which was the catalyst for creating the huge bed shortage we have today. And ended with the inept enforcement of Olmstead.


The ACA has started to repeal the IMD Exclusion, an archaic and discriminatory and hurtful law, in a limited way, as would HR3717, Murphy's bill. Please discuss the Medicaid IMD Exclusion. It needs to be fully repealed.


I support HR3717 for the other reforms, especially the changes to HIPPA to allow families greater participation in their loved one's care....although I would prefer a complete separation from SAMHSA for the treatment of serious mental illness as they have abandoned the Pauls of the world. SAHMSA ignores the fact that half of all people with schizophrenia lack insight....have anosognosia.



Please read our book about Paul...then remember...he was one of the lucky ones because he was never incarcerated or street homeless. It also provides the origin of Perpetual Determination.



Ilene Flannery Wells
Pauls Legacy Project

www.shotintheheadbook.com

Flan said...

Thank you Tracey!

My family started the journey into the realm of treatment for the seriously ill with mental illness when my twin brother Paul became severely ill with schizophrenia in 1976. At the time, the severity of the illness, not whether Paul was a danger, was the deciding factor for the need to keep him in the hospital. It was the fact that his positive and negative symptoms were very severe...had nothing to do with his "behaviors" per se... now it is all about behaviors even though Dr. Insel of the NIMH will tell everyone that it is the very psychosis that is the danger...to the person's brain.


The fact that Paul had no clue he was sick, combined with the persistent severity of his symptoms, meant he did not have the capacity to handle or benefit from treatment in the community... This perfectly aligns with Olmstead. Yet it is ignored by the disability rights groups. Yes, the state hospitals were crumbling run down places and at the time even I considered it like a prison. ..but it wasnt...it was a hospital... but I can almost guarantee that had Paul become sick today...He'd be in prison because of this horrible "dangerous" standard which no other illness is required to meet when a person lacks capacity.


My parents agonized over the decision to have Paul committed. Yet, when he was released, we were unprepared for the changes that we had no clue had taken place during those 20 yrs...and Paul suffered greatly from the expectation that he learn to "live like an adult" when he was still delusional and had severe cognitive disabilities (schizophrenia is, after all, a developmental, cognitive brain disorder). And he never gained real insight...even when he was dying of lung cancer. It took a fatal illness to get him in a facility that treated him as a whole person....yes, an institution, and it was the one year that he had the best mental state he ever had in his life. I will cherish that last year.


I am so very grateful now that my parents were able to commit him, as agonizing as it was for him and us. Since there was no HIPPA, my mother was still very involved in his care...was there every week for 15 yrs...till she died....and the doctors gladly shared what they were doing and what his condition was with her. We did not get that same cooperation when he was released...to the detriment of both Paul and us.


Not all are so severe that they do not recover, as Paul never did. And most do not need institutional care. But they aren't even getting the chance of treatment now, like Paul did.


Many friends of mine have a "Paul" of her own. There are far too many of them out there who are crying out for help and now one has listened - until now (HR3717). I call them Tiger Mothers of Perpetual Determination... my mother was the original. I am a Sister of Perpetual Determination.

I am Adam Lanza's "sister". Like you are his "mother".

Paul had a rough life, made worse by the failures of the system, beginning with the Medicaid Institutes for Mental Diseases (IMD) Exclusion, which was the catalyst for creating the huge bed shortage we have today. And ended with the inept enforcement of Olmstead.


I support HR3717 for many of reforms, peal back of the IMD Exclusion, the changes to HIPPA to allow families greater participation in their loved one's care. and reform of SAHMSA which ignores the fact that half of all people with schizophrenia lack insight....have anosognosia.

Please read our book about Paul...then remember...he was one of the lucky ones because he was never incarcerated or street homeless. It also provides the origin of Perpetual Determination.


Ilene Flannery Wells
Paul's Legacy Project

www.shotintheheadbook.com

Flan said...

Sorry, it rejected the first one so I posted again with some edits...you can delete one...

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